Hi Roxy,
Since I have gone through two teenagers and their reports and starting on the third--a thirteen year old--I know about those last night panic attacks! So I'll answer some of your questions for you.
!. Albinism is an inherited condition--genetics. It is recessive, meaning both parents must be carriers in order for a couple to even have a chance of having a child with albinism. Then the chances are one in four for each child they have (not one child out of four, but one in four each time they have a child.) This is true only for what you would know as albinism--involvingwhite hair, pale skin, and blueish/greyish/purple eyes. Ocular albinism, which affects only the eyes is different, it is inherited as a sex linked trait--meaning mothers are carriers and pass it to their sons. The term for the first type of albinism is oculocutaneous albinism.
2. In the medical sense, no, not normally. Negative symptoms generally just involve a person's vision. However, most people with albinism use far more sunscreen and wear hats and sunglasses to protect themselves from the sun, as we do not tan. Treatments for the vision problems range from nothing, to glasses or contacts for refractive errors like near sighted or far sighted, to surgery for 'crossed eyes' or misaligned eyes. None of these treatments correct our vision completely, they actually do not address the viual impairments that are actually caused by the albinism--lack of pigment in the retina, uneven routing of the optic nerve, and nystagmus, although some do help the nystagmus--eye shaking, to some degree.
3. I don't know anything specific, although the University of MInnesota is THE place for albinism research.
4. 1 in 17,000
5. I have to be more cautious about overexposure to the sun. I also cannot drive, although there are some persons with albinism who do. That depends on how good of vision a person has and the laws in their state. Most of our vision problems involve glare and the inability to see details. For instance, I can see a person across the table from me, know who they are by sight, tell what color of hair they have and what color their shirt is, but I couldn't tell you their eye color or if there is writing on their shirt, unless it is huge I can't read it. Same with a name badge--I would need to invade their personal space to read it! Other than that, my daily life is just like any one else's.
6. Everyone with albinism will give you a different answer on this. My answer even vries depending on my mood! I guess the frustration of people not understanding what I can and can't see at times. For instance, today my boss wanted me to switch a sign at work and she was pointing at it from a distance and I had no clue until I asked which one, and she still didn't give very detailed directions--but I figured it out. People pointing and saying 'over there' I guess is my biggest complaint!
7. While people with albinism have skin that is sensitive to the sun, not all of us have sensitive skin in the way most people think--like allergic to different soaps and perfumes. I do not think their are any products specifically for persons with albinism. Many of us do find the purple shampoos marketed for persons with grey hair are very effective in keeping the yellow out of ours. Also, make up is often an issue, very few foundations and such are light enough. There are a few out now, I was at they beaty suply store where my oldest daughter--a beautician--works, and they carry a line of mineral make-up called Youngblood that has shades as white as I am!
8. I am and so is my brother.
9. Neither--I don't know any other way. I may do some things differently, like wear thick glasses over my contacts to read, use a magnifying glass to read small things when I am shopping or at a restaraunt, have software on my computer to enlarge the screen,
use a monocular--like half of a pair of binoculars--to read things at a distance like a menu at McDonalds or bus numbers or sings at an airport or train station, but I don't think about it when I do it, because it is just part of me.
10. The majority of people think that Hollywood 's portrayal of persons with albinism is cruel, wrong, and perpetrates the myths about albinism. Many have also been teased as a result of these movies. They think it should be stopped and that movies portraying us in positive ways should be made. Other than being called Casper when I was little---and that didn't bother me too much, after all it was a cartoon and he was friendly, I have never been teased or mocked because of anything portrayed in movies by Hollywood. While I do think they have overdone the 'evil albino' thing, I also think that persons who are affected by albinism, either themselves or close family members, are more alert to the misportrayal of their condition. I cannot honestly say whether we, with albinism, have been misportrayed more or less than anyone else. Most people on this forum will shout more, but I can't honestly answer that. While I think it should be toned down, the Bill of Rights does guarantee free speech, and this is the entertainment industry we are talking about. We can choose whether to view these offerings or not. Money talks, and if they make less money off of evil albino figures, they will create less of them. PLEASE REMEMBER--THE ANSWER TO THIS QUESTION IS MY OPINION ONLY AND NOT THE OPINION OF THE ALBINISM COMMUNITY AS A WHOLE. THE MAJORITY WANT IT STOPPED, STOPPED NOW AND POSITIVE/CORRECT PORTRAYAL OF US IN ALL FUTURE OFFERINGS.
One last note, while the term albino is probably what you have read in your science books, and to say someone is 'an albino' is scientifically, medically, and grammatically correct, the majority of peole with albinism on these webboards, especially those with young children, prefer that we be referred to as persons with albinism. Many adults feel that way, also, due to the negative connotations the word albino has for them because of the was it was used towards them by others.
I hope this has been helpful.
Good luck,
Joni
PS I'm 48, married, mom to three daughters and grandma to two little guys! None have albinism.